Thankful

Before the Thanksgiving moment is totally past, I wanted to share my feelings about gratitude and memories of last Thanksgiving. I think it is obvious that we have a lot to be grateful for. But to name a few things. we are grateful for how well Brandon and Katelyn are doing. We can't count all the bullets we have dodged. For Derek and Blake who are amazing little boys who have exceeded any possible expectations during the last almost year and a half. Being great big brothers comes naturally to them and I have honestly never heard a word of jealousy from either of them. We are so grateful for good friends and family who mean so much to us.

This year we enjoyed Thanksgiving dinner at our home with my mom and the Sinema family. We had a great dinner and then went to see Bolt and then back home to enjoy pies and ice cream. It was a great day.

Last year Thanksgiving was another of those really, really low points for our family. And one that I think needs to be acknowldged. There is something about reflecting on the past that I think is so important. It teaches us so much to reflect on where we've been.

On Thanksgiving day we were preparing to have a nice dinner with our family. We were preparing the meal and were so excited to have Katelyn home and we were preparing for Brandon's transfer to Utah Valley. While dinner was finishing up we were upstairs doing something and then we came downstairs to finish up with dinner. We put Katelyn in her swing and walked across the room when we heard her choking. We quickly discovered that the nasal canula that deliverd the oxygen she needed was filled with water. Blake had been playing around and turned the humidifier on the oxygen upsidedown. When we came down the water started flowing down the tubing. This resulted in a frantic 911 call while Brent tried to get her breathing (she was basically drowning in all the water) and a visit from the paramedics and later a trip to the emergency room at Primary Children's which left Brent and the boys sleeping in the van waiting to find out what to do. Thanksgiving dinner was ruined and the day was horrifying.

Looking back on the whole thing, I still see everything unfolding through the viewpoint of someone else. I couldn't believe it was happening to me. What a difference a year makes. We can't say that enough at our house. More than anything else, I am grateful for my family and how happy our life is now. While it may not be normal by anyone else's standards, it is our normal and we love it.

Firsts

I wanted to share the some of the recent firsts in our family.

Katelyn wore shoes last Sunday. We have looked and looked for shoes that would fit either of them with no luck. Both she and Brandon's feet are not only small, but Katelyn espeically has very narrow feet. Not the typical fat baby feet. So anyway, a lot of effort and thought has gone into trying to find something that would work. On Sunday I put some thick tights on her and then happened to think of some shoes that Wendy gave to us and they were just narrow enough for her to keep on her feet, but after all of that effort - she hated them! She wouldn't even stand up in them. She wouldn't let her feet touch the ground in them. Today we tried again, and she loved them, but they really are just so big she couldn't keep them on. But she liked them a lot more and really liked her dad's shoes too.

Brandon is cruising. Okay, so this doesn't mean that he can stand and cruise independently, but he can side step and mostly support himself at our ottoman. I am just elated that he is doing some reciprocal movement with his legs. It is very encouraging. He is also sitting pretty consistently. He has been on and off for the last couple of months - frustrating! But he seems to like it now.

Blake and Derek are making the adjustment of being in separate kindergarten classes just fine. They like it and they both seem to be thriving in every way. The social aspect is tricky when it comes to playing with friends, etc. Blake has gotten a couple of invites that have been for just him, because they are in his class. Until Friday it has always worked out so that they have both been able to go and play. But on Friday Blake went to go play at his friend Will's house and Derek had his friend Rilee over to our house to play. I know it sounds silly, but it is the first time thier social calendars have parted. And It was a bit weird for me, but not for them. The funny thing is that for all of the planning and discussing that went in to making this a happy thing for everyone (and trust me there was a lot of that!) Blake's friend's mom emailed me Friday morning and said that Derek was welcome to come. That is totally what he would have preferred to do, but I think he still had a fun afternoon.

Katelyn took her first steps this week. She has been standing and wallking with toys for a while, but we've decided she is just too chicken to let go and walk. So I started working with her to get her to let go and come to me and she is doing it! She is so afraid. She loves to push things around thought, here is her recent favorite push toy (this also happens to be Brandon's favorite toy to play with). On her hardwood floors she practically runs with this thing. I got out of breath trying to capture her doing this. (yes, i am THAT out of shape!)

And yes, those are her bloomers on her head. We are looking for a cute hat for her for Christmas. She loves to wear things on her head!

Brandon's lungs seem to be healing and making progress. By summer he was only needing oxygen while he was sleeping. While we continued to use the pulsed oxymeter to monitor his oxygen saturations we started to see an unusual trend by early Fall. Some nights he would need oxygen and some nights he wouldn't. Finally one night Brent said he'd had some trouble with the probe that goes on his foot to measure the oxygen saturation. I changed it later that night and he hasn't needed oxygen since, so it was really just a bad probe I think. So sent the big oxygen tank back and just kept a little one for security through the winter months with respiratory season and all. This is the first time in 13 months we haven't had a big tank on the stairs.

This has left a permanent mark on the carpet on the landing of our stairs- a good reminder of where we have been will help us be grateful for where we are.

And last of all a family first for us. We have Christmas lights on the house and they are all up already. I am so excited! I wish we had more, but maybe next year. For now I am happy that the bottom roof line is lit and maybe next year Brent can figure out getting the top level, but I love Christmas lights and have always wanted to have a fun lit house at Christmas. Maybe I will post pics later.

Too Many Doctor's Visits

This blog has become more of a family blog than a blog about Brandon and Katelyn. We are considering starting a separate family blog. However, the way we work, it will take a long time for us to get around to it so in the mean time we will keep sticking everything here.

I miss our old camera. These photos just aren’t as good.

It’s been a busy week. Amy and the kids made several trips to the doctor. Everyone has been sick. Brandon and Katelyn have been sick and we are treating them as if they had C-diff (although we didn’t have them tested again). Derek had a really bad fever and Blake had a bad ear infection. We are still working hard to avoid getting sick but we can’t seem to avoid it completely. It makes me nervous about what might happen this winter.

To try and keep babies from getting RSV and having to be hospitalized a medication called Synagist can be administered. However, they only give it to babies or kids that are at high risk and qualify for it. We found out that both Brandon and Katelyn qualify. It wasn’t surprising that Brandon qualified because he’s only been off of oxygen for a short time but it was good news that Katelyn qualified. The bad news is how much these shots cost. The bigger the dose the more it costs. As they grow the dose needs to be increased and the shots get more expensive. They will need a shot every month during RSV season. Most likely 4-5 months. The dose that they will need this month will cost.....

…$3K a piece for a total of 6K. That’s right, $6K this month. It gets even trickier because there are a bunch of ways to get these shots. They will even come to our house. However, each method has different insurance coverage so Amy’s spent a lot of time on the phone trying to figure out the best method.

The other day the insurance guy came in to give everyone the lecture about signing up for next year. The topic of the lifetime family maximum came up. He said that it’s $2million but assured us that no one ever reaches that max. The insurance company can't easily give us our total -when we ask they just tell us to add up everything on the paperwork they’ve sent us. They must not understand that this is literally several reams of paper. We keep thinking we have to be misunderstanding the total, because our best guess is that we have crossed the $2 million mark. Health care costs are just so amazing and it is funny how confident the insurance guy was that no one ever reaches the max.

These where taken in our backyard the other day:

Here are some photos from Halloween that I should get up before Christmas:

Halloween Memories

Halloween was so fun with all four kids. I couldn't help but think of last Halloween. Katelyn had been home for a few weeks but Brandon was still at Primary Children's Medical Center. That day he was still very sick after surgery and we found out he had blown a Nuemothorax (a small hole in his lung) and there was free air in his abdomen. They had inserted a chest tube to release the air. He was so ademetous that nothing we had gotten him for halloween would fit anyway, but he was so sick and had so many lines and tubes that it didn't matter anyway. We laid his onesie that Derek had made and the hat we had picked out on top of his swollen body for pictures. It was a sad day and I remember vividly the disappointment and pain of the day. When the babies were first born we told Blake and Derek that they would probrably be home around Halloween. It was three weeks past term and we thought it was a safe estimate, but that day especially it was abunduntly clear it would be much longer for Brandon.

Tonight we enjoyed taking all kids trick or treating and the worst thing that happened is Brandon threw his glasses out of the stroller without us noticing. But we noticed fairly quickly and were able to find them - well Blake was able to find them (which was no easy task in the dark, after a light rain, with leaves everywhere - thanks Blake!!!) They were completely unharmed in spite of the fact that they were on the sidewalk on Halloween night for 20 minutes!!!! What a difference a year makes! It is truly unbelievable how much different life is now than it was last year. I would take looking for miniature glasses any day over what we were dealing with last year. We are so richly blessed and there simply aren't words sufficient to express my wonder and gratitude for the miracles that are my children!

Sorry for the bad lighting! Our camera with a flash is not working, so this is one was taken with our video camera. Blake was a black ninja and Derek was Obi One Kanobi. I was Chewbaka.

Brandon and Katelyn got to go "trick or treating" at Brandon's motor class at Kids on the Move.

The cutest little devil!

Brandon wearing his signature pumpkin hat in the NICU last September.

Derek with Brandon - Halloween 2007

Brandon - Halloween 2007

Halloween 2008

Drink!

Our latest challenge with both Brandon and Katelyn is getting them to drink. A couple of weeks ago Katelyn decided to quit nursing. We’ve also been working on weaning Brandon. This all sounds great but we’ve really struggled to get them to drink enough. They aren’t showing any signs of dehydration but it’s not uncommon r them to drink half of the daily minimum, despite the fact that we are constantly offering them drinks.

We’ve tried all kinds of cups. One of the interesting things we’ve tried was hair coloring bottles. They made it easy to squeeze and help the babies get the milk through the straw. They still weren’t getting enough. We talked to the doctor and he said if they get less than 10 oz. for a couple of days in a row that we needed to bring them in. This was kind of scary because we know what kind of things they do when babies aren’t eating and drinking enough.

Despite our efforts to keep our family healthy, we’ve been sick lately. Derek had Strep and Brandon had a Ear infection. Although Katelyn didn’t show many other signs of sickness weh ran a slight fever and threw up a couple of tijmes. This made it even harder to make sure whe was getting enough fuilds.

With the suggestion from one of our therapists, Amy did some hard-core modifications to some of our sippy cups by replacing the straw with some tubing. The good news is that it seems to work. They drank more today than they have for weeks.

When we were in California we had some family photos taken. The photographer was great and he posted a handful of the pictures at his blog. I put some of hem below.
Here is his blog: http://www.briankhang.com/blog/the-fox-family/

I got a bunch more photos of our trip to California from my family.

The water was very cold but we couldn't slow them down, even after Blake took in way too much salt water and lost his lunch. He was heading back the waves before we could burry the evidence.

California

It’s been a while since our last post. We’ve been busy. We recently returned from a trip to California. The boys had some time off of school and it had been years since we visited my family in California. It was time for the kids to get to know their cousins, aunts, uncles and visit Grandma and Grandpa’s house. We got a chance to go to LEGO Land, Disney Land and the beach. The boys loved all of it.

Our camera quit re-charging part way through the trip. However, with the help of cell phone cameras and getting pictures from the rest of the family, I have a bunch of pictures to post. As we get more from everyone else I’m sure we will continue to post pictures of our trip.


Brandon has recently started tucking his legs under his body when he sleeps. This was taken at our brief stay and my Aunt and Unlce's house in Vegas on our trip. We came into town very late and left very early each time we passed through Vegas.

Brandon with "Fireman" Uncle Nathan.

Cousin's and and Aunt Deanna on a roller coaster at LEGO Land.

Watching Their Weight

Brandon and Katelyn are still very small. Although I don't know exactly how big Brandon and Katelyn are - last time Brandon was weighed he was 15 lbs (about 3 weeks ago) and Katelyn is narrowing the gap. As I have been doing some shopping for them to have the fall/winter clothes they need I have had to laugh. They are wearing 6 month clothes now. I find that shopping forthem is kind of the opposite of shopping for myself. I hate to shop places where the sizes run small and I need to buy a bigger size to fit me. I would always rather be wearing a smaller size on the tag ( I know this is completely ridiculous, but true!) I do the opposite for the babies. I love Old Navy and Target's sizing because I can buy bigger sizes and the fit them. There is something very exciteing about them wearing a 6-12 months and having it fit well because it least it has their age on the tag.

Now that we are transitioning out of traditional baby food to more and more table foods, we have to find new ways to sneak in a few extra callories. Squeezable margarine can go in almost anything, although we don't usually use it in food that is not sweet. But we are adding heavy cream to the whole milk they are getting in a cup. We still add formula to any baby food they get and yogurt, applesauce, etc. Who would have ever thought you could do these kinds of things to keep a kid growing. Katelyn is still also on her appetite stimulant as well. We go in a few weeks to the doctor so we'll find out how much they are gaining then.